justinelaymond.com

I have had a very busy weekend and Saturday 25^th including an appearance as Cat Woman...I will tell more later. I met up with my friends - and went out with the girls firstly for lunch. This yet again was another achievement for me, sitting in a trendy kind of canteen bar - with people looking at me. I tried to carry on as normal, although I was aware of looks - and I felt like telling people what was wrong with me (although I didnt.)

From there, we walked to some shops - I had one girl on either side of me with my arm looped in their arm for extra stability. I turned up the oxygen whilst I walked to compensate for the decrease in my oxygen saturates - that would happen when I walked.

I finally went home - exhausted - and it was the most walking I'd done in 3 months! It was a friends Birthday, that night as a fancy dress theme. I went as Cat Woman, and Jon as Chewbacca (the big Furry character from Star Wars). I only stayed for a short while, as I was getting tired and the days events were catching up with me. There were some people who had not seen me with me with the oxygen at the party, and initially I was a bit overcome by this. I left feeling very happy and emotional with everything that day.

The following day (Sunday 26^th), was the Trent Park Run - and I made a guest appearance at that. Again, I was overcome by this and the people running for me - thankyou so much and all the support from everyone and those who attended. It was actually a great morning event and I enjoyed watching it and especially Jon who ran in the Chewbacca outfit!!

I have been out yet again (on Monday 27^th) with my Mum this time - and got some more shoes - 3 pairs...a girl can never have enough shoes!! ha ha. Thanks Mum for coming out with me, it was fun. I also bought my Dad a nice cake - who hasnt eaten it yet....I might have to eat his then...come on Dad...eat up.

I feel Ok in myself, just a bit anxious if my lung goes again this week or next.....well fingers crossed I may be lucky? Please pray with me on this too. Have a good week everyone - speak soon. xx

24 June 2005

I am so glad today is cooler - more bearable to be outdoors. Well...I did go to a salon yesterday, and got my hair dyed dark brown and bright red chunks throughout - back to the wacky me! I was in the salon for 3 hours almost (phew)...and managed with people looking at me, and felt happy to talk the stylist about my illness quite easily....guess the more I talk about it - the easier it is to come to terms with.

I am so proud of myself with my venturing outside...weeks ago...I wouldnt have dream of it - and felt very bitter and angry inside with people looking - a far cry from the bubbly me. I am still trying to remain positive - that being on oxygen is a short term thing, and will be no more when I have new lungs.

I forgot to mention that in the first few days of taking the anti-depressants, I woke up feeling sick every morning - thankfully, not now. Also, I slept for hours and hours! When I saw my counsellor yesterday, she also said "well done" with my achievements in the week since she last saw me, and was amazed - that positive feedback - made me feel good too.

I do think that my mood has lifted, and things are becoming easier. I am hoping to go food shopping in Tescos today, and out tomorrow with some friends for lunch.

I want to also thank my Mum loads as she has been taking real great care of me, and I really appreciate Mum's help, and Dad with helping too.

Have a nice weekend...Im still playing catch up with responding to all the messages - I will get there soon! xx

My adventure shopping

I went into Next, Marks & Spencer, and Starbucks. Wow...what an achievement!!.. I was on a high...bought some clothes/pair of shoes...and a very creamy Frappucino - caramel flavour...yummy!

I did get looks, but, I felt OK...and told a cashier in Marks to look at my website...he seemed bit overcome by my bolshy manner...guess...I'm getting back to my true happy self. I said on the way out.."I cant believe Ive just done this"...and I still cant...so....where shall I go next?...Better leave my credit card at home next time....like a dog on a leash....looking at all the clothes...and trying to get from one aisle to the next...although...I have to go slowly.

Chow for now

21 June 2005

Just a quick note again, I ventured outside! I went to a local park and to a local newsagent and bought some lolly pops! It felt good for the 1st time going outdoors - guess it will get easier as time goes on.

I have decided not to do a home DIY DYE hair job/disaster...but have an appointment at a salon...again going to see people as I am. The more I do this by going outside, the more comfortable I will feel and except the way I look and how people look at me.

Hope everyone has been enjoying the hot weather - I'm glad it was a little cooler today.

Oh..I have now completed another page of messages - still playing catch up ...but I am getting there...

Best wishes ...me X

20 June 2005

Just a quick note to everyone - I am feeling slightly better - the tablets are helping me...making me more calm/less anxious..and I'm sleeping lots too.

I feel a little happier, and starting to relax with the oxygen tubes up my nose - and start to go outside more. On the weekend I saw lots of friends which was very nice too. I guess its a case of relaxing with this until my transplant - and I cant wait until that day - do so many things again.

Also, I am slowly getting to respond to all the messages - just finished page 6..still lots to do...so keep checking if I have replied to yours. Its so hot in this heat - there is only so much I can do.

Short and sweet for now... I'm having a chinese take away tonight (love crispy duck..yum yum) and watching a dvd...can't be that bad - eh?..

Speak soon. xx

17 June 2005

Hi again

For the first time in my life, I can say that I am depressed, and now on anti-depressants, after advice from a counselor today. I have cried for two days now - and this is not me (those who know me - know that this is not my character). I will see a counselor every week now - and maybe another counselor too - if this can be arranged. I have felt lonely, and I am not near any of my friends - so, do not get to see them as often as I used to.

I do have the support from Jon, and my family on a regular basis - but, I am also on my own quite a lot - and as I am finding it hard to go outside with my oxygen tubes - my life has been restricted the last 3 months. I am a very bubbly, out going person - loving life and socialising, but, now I have been mostly indoors!

My counselor was amazed how strong I have been the last 3 months, and that I haven't been depressed sooner knowing my outcome/diagnosis of health - waiting for a transplant. I did take a visit outside to the chemist today to get some toiletries..which felt weird with people looking at me. I bought a red hair dye...need to sort my locks out...Mum will help, and that will cheer me up! Some people looked over in sympathy - others wondering what the hissing noise was.

I now have a small portable oxygen that I can carry over my shoulder, it makes a hiss noise every other breath. I also went to a local park and walked a short distance. I sat on a bench with my Mum, and little tears welled up in my eyes. All things we take for granted walking and breathing! I need oxygen to breathe, and a wheelchair for long distances to help prevent my shortness of breath (even with the oxygen!).

This is why, I cant wait to have a transplant - and have a life that sometimes I feel I have been robbed of, and do all the things and more again! I started to learn Karate before all this happened, and I want to re-learn again - maybe even start dancing again - just to prove a point to myself - that I can do again!

I feel happier now, from this morning - it helps going out and talking to someone, and soon I will see Jon - and he knows how to sort me out - get me laughing and smiling again. Maybe this has been just a low day, and tomorrow I will be bouncing from wall to wall...yes..I will!

I am sending my love to you all, and I believe every day, that I will be lucky to have the call and get the transplant...please soon...please...I want my life back again!

Best wishes to my devotees - you are all making me keep my spirits up and strength to continue to fight...so, please keep leaving me messages - I do read them!

I am back home - yet again, from another hospital stay - which is becoming part of my lifestyle now. I am happy being home, but, also feeling a little down - I will be seeing a counsellor tomorrow. I also speak on an open forum Lam Line through emails - which is a great network of support with other Lam patients like myself. The Lam Line forum is through Lam Action...details of which are on my website. I will also be ringing some of these people ...this is a horrible disease, and it is reassuring knowing that there are others - who have been through similar symptons..even though there are not many of us!

I have always been kept updated with messages coming in on my guest book - and thankyou all so much!..It really cheered me up, and I cannot believe the support that I am getting - and from all over the world. I feel like a mini celebrity...I always wanted to be famous...but, not really for this illness though! I am also glad that my message about being a donor is getting out there, and that some people have registered, thankyou. Even that some of you are touched by by website regarding my strength of character, and looking at your own lives whether good or ill health too - and that each person gains something from me. I have so many feelings for all of my supporters out there - and feel so much love in the world - and I do need it.

I will respond to all the messages - keep checking back for my replys..it make take a few days/week...I've got so many to respond to - but, I'm happy with that - will keep my mind occupied.

I still cannot wait until I get the call for the transplant!!...I am in fear - yet again, of my lung collapsing a 4th time in a few weeks when my next menstrual cycle starts. However, my consultant keeps his fingers crossed, that as I have had a few chest drains in now - that my lung will have scarring in the lung lining - so hopefully will not go down (fingers crossed)..It is horrible to be in fear of this...and I worry how much longer my lung will hold out - being that I am now living on one very diseased lung!

Please stay with me - and I will get back to you - may take time...thanks again - I am so touched constantly - and tomorrow, I am sure I will be laughing around like normal..guess I'm going through the mixture of emotions - which is common waiting for a transplant - and we were told that I would probably experience this.

Firstly, I am very saddened to loose a friend of mine I met in hospital named Ida. Ida was a true inspiration, and although I only spent one week in hospital with her, I feel like I've known Ida for years. My thoughts and love go out to her wonderful loving family. Ida was the most awe inspiring lady I have ever met, and like me continued to fight her battle. Ida suffered from Cystic Fibrosis and Lupus. I am so priviledged to have shared the emotions of an amazing experience that Ida had. To see Ida beam from wall to wall, and smile like the Cheshire cat in Alice in Wonderland.

Ida's experience, was that she had a shower for the first time in a year! She was wheeled in a wheelchair,and I cannot forget her happiness and smile, in actually going under a shower - as opposed to being washed in a bed. Ida was over the moon and could not stop talking about how wonderful that was, and I am glad I was there to share her happiness.

I went through a very emotional roller coaster of emotions there, and we helped each other through the lows...and had lots of laughs too. Ida you will always be in my heart, and you told me that I will get through this. God Bless You. XX

The main aspect that I would like to share with you all now is the importance of carrying a donor card. I understand it seems a scary concept - myself included (not now though), and no one wants to think of times ahead. However, sadly - when our bodies are at rest, what need do you have for any of your organs? By being a donor, can make the difference to one or many people's lives to continue having a life - and giving that person a second chance no matter what age they are.

The reality is - if I do not get a donor, then the clear and simple message is - I will die. I do not think that this will happen to me, as I am being more positive than that. But, again the reality is that hundreds and hundreds of people die each year waiting for a donor (some cases it may come - but too late).

My message is please look on my website under USEFUL LINKS, and look at NHS UK TRANSPLANT - How To Become A Donor - then there is an option where you can REGISTER NOW. It will take seconds to do, but, will give someone a life for your compassionate seconds! Thankyou.

I wish you all a good day, filled with all my love, and still thankyou for my messages of support and from all over the world now...I feel very special and very loved from each and every one of you. XX